I sincerely want to thank everyone for all of the prayers and fasting that you have done for Arianna. I do believe that is what has helped her make it this far and that is what will continue to help her.
The condition that she has is obviously a chronic Illness. LCH is not a cancer but it is treated as a cancer and it acts like a cancer. In some cases it is in our favor and in most cases it is not in our favor. There are single symptoms of LCH and there are multi symptoms. Arianna has the multiple symptom's. The disease is in her brain, liver, spleen, kidneys, tissues and bones. The pain can be and is very severe at times, it was explained to me that the pain in her bones are similar to having a cavity drilled out without any Novocaine. The pain in her tissues are such as a bee sting very irritable and itchy. The pain in her organs are similar to a cut that has been infected with the swelling sensation.
She has completely damaged her pituitary gland, what has happened there is that her brain is telling her body that she is thirsty (and she is) however her brain is also telling her kidneys that she does not need the water to not absorb it or concentrate the fluid and just pass it through the bladder. That is sad to know because at times before we were not allowing her to drink for 8 hours. (under St. George Doctors instructions) The Doctor here told me that her thirst is that of being out in a hot dessert for hours without water and not being able to have it. So when she would drink it, it would only soothe it temporarily thus explaining 2 to 3 gallons a day. We do believe we have that under control now. She is taking a medication called D.D.A.V.P. That's the acronym I do not know what it stands for.
It appears that this will be a life time of medication. Apparently the damage to her pituitary gland is permanent. Her immune system is shot right now. She is susceptible to anything and everything. They have us in a room with double doors requiring washing and sanitizing twice to be able to get to her.
I think the best way to know about LCH is to go to this website http://www.cancerbackup.org.uk/Cancertype/Childrenscancers/Typesofchildrenscancers/Langerhanscellhistiocytosis
The question I have and many have is: Will she make it? According to science and medicine the odds are definitely against her. Primary Children has treated for LCH and this is one of the worse cases that they have had if not the worse. The fact is that PCH has loss patients to LCH. Due to the aggressive spreading of the disease its not helping at all. Also the stage at which she is at is very late in the game.
However, I do believe she is going to make it and this is why. She has fought so hard to remain alive. She should have passed this last week but she hasn't. I also know that the many prayers and fasting for her has helped with her pain and has helped her continue to make it this far. It has been a while since I have seen the power of prayer to this level to where it is an obvious intervention from God.
I want to thank everyone that has taken part in this. It is always a great experience to be a part of a miracle from God. I am not one to get spiritual or profess a divine intervention simply because I hold those experiences dear and sacred. However, I want to let everyone know that there is no question in my mind or soul that the reason she has had success to this point is because of all of the fasting and prayers for her. It has been nothing short of a miracle.
She is not out of the woods yet. Just like last night, she took a terrible turn for the worse. We went a day without a blood transfusion and thought, "This is great she is getting better." But she got a terrible fever, her heart rate became very high and the pain increased to a rate that would not allow her to sleep. This was all after she had received her pain medication. After we had done another blood test we saw that her Red blood, white bloods cells and her platelets had dropped to a life threatening level requiring an immediate blood transfusion.
Not to mention we are dealing with a ROID RAGE baby. They have her on steroids and it shows in her temper and in her appetite. She will hit Haley square in the face just for looking at her wrong. (It's actually kind of cute.) When her food arrives those are the happiest moments of the day for her.
Needless to say, we are fighting a war here and some days we win the battle and some days we don't. But over all we are winning the war at this point. It is obvious that according to medicine and science the odds are against her. But I do know that the power of prayer has been the factor of success.
I have just given you the very, very watered-down Readers Digest version of the circumstances. Again, thank you to everyone, and please keep praying.
With much love,